Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-14-2008, 09:23 PM #11
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I'm still with you on getting the trial. even tho I now have to have a revision, and move the battery from my butt to my belly, I would go thru it again just to have my life back. I can't remember how bad it was before the scs. Now, I just love it. it really has given me so much back. I still take meds, but at lower doses then before. I know there are scary stories out there, but until you try the trial you will never know how it will work for you. I really think I would give up on life if I had it removed. that is how important it is to me. No, I'm not 100%. but at least I can usually function fine for a while.

Hugs
Mary

PS.

Lynn,

Did you have the battery moved on one of the revisions? Just wondering how the recovery was.
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Old 08-19-2009, 11:01 PM #12
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A pain specialist in our area told me about the SCS but my insurance refused to cover it as there was not enough proof of improvement for patients and it cost $40,000. I remember there was an article in the paper about it and apparently there problems and they had to stop using it due to malfunction. I haven't heard anything lately but I do know there are success stories and, boy, wouldn't it be nice to reduce your chronic pain!! I wish the best for you!
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Old 08-20-2009, 07:27 AM #13
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Quote:
Originally Posted by Lisa I View Post
I think he is just plain and simply scared of having something implanted in him
Lisa,

I have written on this forum many times about my stimulator, so I will not go too long, only to say I wish a "better surgeon" had done it. The stimulator works well, but the other effects of the surgery (location, scar, etc.) could be better.

I also feel the Spinal Cord Stimulator (SCS) should be done only after all other treatments have been tried.

Before you get an SCS, you need to have a psychological evaluation. The psychologist is looking for several factors to see if you are a good candidate, and one is to see if you will “freak out” by having an electronic implant. Many people have a problem with having things in their body that are not God-given Original Equipment. You husband should not be “talked into this.” That is not to say you can’t present him with good research and be encouraging, but he needs to really be accepting of the concept.

Keep reading up on as much as you can find. This is a big decision.

Good luck to both of you.

Mike
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Old 08-20-2009, 12:33 PM #14
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It's ultimately all up to him. I'd not try and influence a decision as big as this. As routine as it may be portrayed to be, it's still back surgery with all the risks attached to it.
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Old 08-20-2009, 08:48 PM #15
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Quote:
Originally Posted by Lisa I View Post
On Tuesday my husband will see a neurosurgeon who may recommend a scs. A pain clinic doctor recommended it about a year ago and my husband was very against the idea. I think he is still against it but is willing to go hear what this doctor has to say. I think he is just plain and simply scared of having something implanted in him, scared of it making the pain worse or of the doctor screwing him up worse (since his hip replacement caused this to begin with). I'm trying to find out what I can about spinal cord stimulators -- are they painful, what is the typical recovery time, has it made a difference in your pain and activity level. Right now my husband hurts constantly but he still tries to do things like cut the grass or chores around the house, but he suffers terribly for it. He thinks that if it will just reduce his pain by 20% that it's not worth it and he'll just keep doing what he can do today and just live with it. I'm trying to explain that this disease progresses and that it's better to try and reduce his pain now, because afterall the pain meds will probably stop being effective. Is this something I should really try and encourage him to do? The Pain Clinic doctor recommended it and then just dropped it.
i am very much against scs. my trial worked great. my perminant didn't work at all and made a big spread. i was scared to have it removed in case it caused another spread. the battery and the wire made my back and hip hurt, and i was constantly getting shocked. i was "reprogrammed" several times and there wasn't anything they could do to get proper coverage to help my pain.
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Old 04-25-2011, 07:40 AM #16
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Default Should I get a spinal cord stimulator?

I am new to this forum. Last week my doctor suggested a spinal cord stimulator and wants to insert it on May 6th. After watching a seminar from the American Pain Foundation, I heard that the recovery time is very long and can be quite painful. Since I live alone, I am very apprehensive about this. Does anybody have any suggestioo?
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Old 04-25-2011, 05:14 PM #17
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I had my trial stim done on Feb 22 and my perm implanted March 1. On March 2 I was robbed while leaving my pharmacy. We didn't realise until recently the impact of that robbery. After x-rays and ct scans we now have to do a revision surgery. The paddle lead is completly on the wrong side of my spine now, and is actually laying against some nerves and causing a lot of problems. So I'm waiting to hear from my doc about when we can get the revision done. Those few weeks where it was working well enough to cover my RSD arm (left side), I would trade everything to get that back. It is worth whatever hell I need to put myself through. Although I'm sitting here wondering where I'm going to find the strength I need.....
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Old 04-25-2011, 08:34 PM #18
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Hi Jane, I got my perm SCS in January and while I was very sore, I was able to manage on my own. Just plan for some down time and take good care of yourself. I stocked up on frozen dinners, yoga pants, and a heated throw to baby myself through the healing process. I have had a very good success with my stim and am happy that I did it. Lisa
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